Interstitial Lung Disease (ILD)

Before today, I wasn’t familiar with the term Interstitial Lung Disease, but I am now! 

I had requested to meet with my oncologist to discuss the pros and cons of a treatment change to positively impact my lungs as I’m sick of being sick or fearing getting sick so I’m missing out on the things I’m fighting to live for. We had that appointment today.

He reiterated that my pneumonitis is treatment related and not disease related plus confirmed that they did not find cancer cells in my bronchoscopy. However, he also stated that it was previous treatment that put me where I’m at. My current treatment isn’t helping or hurting my lungs. And it is effective on the disease so he is not supportive of a change while it it working. Ugh. But, I get it.

So then we talked about ILD and looking at it as a separate condition with potential treatment dedicated to it. That sounds interesting!! Unfortunately this is not an area of expertise for my oncologist so he is going to consult with my pulmonologist and his colleagues in Boston.

The good news is he understands my position and wants to help me find a way to not be so fragile. I’d like to be reliable and be able to make plans that I can count on plus be able to attend the important events without the likelihood that I’ll end up sick for months.

I’m hoping there is a reason for a trip to Boston soon!

Ugh

I was really hoping to go over a year without being in the hospital, but I only made it exactly a year. Oh well, I needed to go in so I did and am now improving after being home for a couple of weeks. 6 days in a little room is a long time! I was tethered on one side with oxygen and the other was the IV. For 6 days. At least the food was decent. 

Unfortunately all this resulted in a 3.5 week chemo break which means hair has started growing so now my glue-on eyebrows won’t stay on. Such problems. Eyebrows really do make you look less sick so I’m now looking forward to my hair falling back out so I can put them back on. 

In the meantime, I’m rotating through my jewelry for a little pretty.

I’m planning to talk to my oncologist this week to see what the pros and cons on a treatment change would be and if I could come back to this treatment if what we try next doesn’t work. I’m sick of being sick and would like to do something to improve my lungs. Supplemental oxygen really isn’t fun. Time to advocate.

A Rough Week

I was really looking forward to last weekend to see if my side effects would change with my dose reduction. The good news is that I didn’t have my normal GI issues. So exciting! Unfortunately it was replaced by what I thought was a cold so I still spent the weekend sleeping. I just can’t win.

On Monday I didn’t like the color of what I was coughing up so I called the doctor. And, after many tests, they determined that I had pneumonia. Again. Luckily it was early so I could treat it at home. I’ve decided that calling early is the key to staying out of the hospital.

This also means skipping a dose of chemo to be sure I don’t get knocked back down. That doesn’t make me happy, but maybe it means I’ll feel more like myself for a bit?

I’m generally feeling better now, but need to build my energy back up. Little things are exhausting. I’m so frustrated by my limits. Hopefully summer will allow me to stay healthy enough to get active. It is time to get back to experiencing all the things.

Bummer

They reduced my dose. I fought that for a long time, but reached the end of the road and wasn’t given a choice despite my efforts to push back. Toxicity is the word used. I guess I’ve been on this line of treatment for so long that I’ve built up nastiness and it is really hammering me with side effects.  

My issue is that this treatment is keeping me stable at the full dose, but it isn’t making things better. So how can less medicine be as effective? I’m told it is. She said I’m already getting less medicine than someone who weighs more, but that makes sense. I’m still not buying that less medicine an be as effective. I’ll be watching those tumor markers closely.

I can’t change where I’m at so I might as well own it. Maybe I’ll feel better overall? Maybe it will help my lungs? Maybe our upcoming beach vacation will be more enjoyable? Maybe I can eat the things I enjoy without paying for it later? I want to enjoy summer and be able to make plans because I’m more reliable. We shall see.

It Doesn’t Count

I’ve really been looking forward to saying I haven’t been hospitalized in over a year. The last time was April 2024 so I’m getting close… except that I spent a few hours there today getting fluids, but I wasn’t admitted so it doesn’t count, right?

Unfortunately my side effects are getting worse. I essentially lost all of last weekend and wasn’t recovering like I usually do so off to Roswell we went. I am feeling significantly better now and hope that continues through the night.

Now I’m worried about what my team is going to say. I really don’t want a dose reduction, but I can’t keep having those really rough days. There is one more medicine they mentioned to counteract the stomach issues so I’m holding out hope. The last one we tried with the injections didn’t touch the issue. But, I’m not waving the white flag just yet.

TMI

So the GI issues are getting worse and are now consistent. I’m down for 2 days, hardly able to get off the couch and then some recovery time as I build my energy back up. 

Everything that goes in goes out in a really bad way!! But I keep putting stuff in trying to stay hydrated with some sort of nutrients in my body. I’ve experimented in many ways and it doesn’t seem to matter even if all I have is water and a very bland diet, it will exit badly.

My 2 current prescriptions are not making a dent and I am still against a reduction in my chemo. Luckily it is only 2 really bad days every 3 weeks. But those 2 days are so bad! I’ve started to understand some refuse treatment. Don’t ask me what I want to do on those days.

I spoke to my doctor who gave me a choice of a new med that I would have to inject 3 times each of those 2 days or an opioid which I rejected as I’m working. Wish me luck. My 2 bad days should start Friday which is when the new med arrives. 

I’ve also discovered that it doesn’t matter when I eat ice cream or cheesecake during my cycle…it will always end badly so this week I’ll be trying lactaid as life without ice cream is very sad.

I am not giving up on this line of treatment!! But I am determined to find a way to manage it better. 

Pulmonology

I went for a pulmonology function test today and all I was told is that I did better than last time so that’s good news.

Then I met with my new pulmonologist and I’m not happy. I guess it’s normal for a new doctor to want to try the same old tricks, but I’m sick of those tricks. I want to try something new. But, for now I’ll play the game. 

He wants me to stop using the albuterol inhaler every 4-6 hours even though that seems to be helping and go back to the steroid inhaler twice per day which never worked. He says there is long acting albuterol in the steroid inhaler so it should help. Hmmm…

And, he wants me to wean off steroids again. We tried that a couple of months ago and it was a complete fail. I’d really like to wait until we’re out of cold & flu season, but no. Here we go. I’m already being super careful about exposure so I’m not sure what else I can do to protect myself. Maybe no more grocery shopping in person? I cannot get sick again. It takes so long to recover.

I’m a bit cranky today and it isn’t all the pulmonologist. I think I just overdid it. Thank goodness tomorrow is Friday so I can be a slug this weekend. Again. I miss doing things and seeing people.